Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Non-stop Itching / Skin Crawling, No Rash


Oneloved

Recommended Posts

cyclinglady Grand Master
7 hours ago, knitty kitty said:

True links....but typically this occurs in severely immune compromised people (e.g. AIDS).  

"The mortality rate of invasive candidiasis is high in critically ill hosts."


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 57
  • Created
  • Last Reply

Top Posters In This Topic

  • Oneloved

    18

  • squirmingitch

    8

  • cyclinglady

    5

  • knitty kitty

    5

Top Posters In This Topic

  • Oneloved

    Oneloved 18 posts

  • squirmingitch

    squirmingitch 8 posts

  • cyclinglady

    cyclinglady 5 posts

  • knitty kitty

    knitty kitty 5 posts

Posted Images

knitty kitty Grand Master

Apologies for not providing an explanation with my previous post.  Battery was low.

Yes, these studies were done on critically ill patients, and mice and rabbits.  But some interesting things were found.

Candida lowers gastric acid production, and use of antacids allow colonization.  Insulin resistance may facilitate candida infiltration. Overuse of antibiotics make Candida overgrowth possible.  Lactobaccillus and Bifidobacterium help prevent Candida proliferation.

No, they don't have all the answers, but they are working on it.

Posterboy Mentor

Oneloved,

I like Knitty Kitty study a lot about nutrition and find there is often a "vitamin/mineral" for that???

Sometimes not right, but often there is and the doctor's don't study nutrition enough to know the difference.

But many times there are and we just don't know which one(s) to take.  Believe me I know because I have tried most (at one time or another) and when I found the one that I was low in .  . . my health improved drastically.

Knitty Kitty's link is a good one.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/#!po=1.04167

My blood sugar improved when I took Vitamin D but doctor's don't focus on your nutritional deficiency often.

Though the doctor knew Vitamin D might help it me the patient I had to prompt my doctor to test me for my Vitamin D deficiency.

Who knows if I had known about my Vitamin D deficiency sooner  I might of not developed the dental/enamel defects/issues I have had most of my life.

Having said that for itching try Niacin at 50 mg with each meal.  This will cause a "Niacin flush" depleting histamine reserves over two to three days to a week max usually.  After the 30minute flushing has stopped from the Niacin flushing the  itching should improve until you no longer flush after taking Niacin.

After the first couple doses (worse on an empty stomach) the flushing becomes less intense each time till it (flushing) usually goes away after a few days of Niacin.

Here is a couple links on the Niacin flush.

http://www.dpic.org/article/professional/niacin-facts-flushing

http://getwellstaywellathome.com/blog/2015/06/seasonal-allergies-and-the-niacin-flush/

try it for a couple weeks prior for yourself so you will know what it is and are able to explain it to your kid.

also look in to Molybdendum for help with the Candida dysbiosis.

Here is a link about the role Molybdenum plays in detoxification.

https://www.thecandidadiet.com/molybdenum.htm

Potatoe skins are a great dietary source of Molybdendum in the diet.

Also for the Zinc try cold lozenges.

Once it becomes sour/metallic in your mouth you have enough zinc.

It is my favorite way to take zinc.  Otherwise take zinc/copper together so their ratios don't get out of balance.

One (zinc or coppper) controls the level of the other in the body and why they are typically sold together in a 15 to 1 ratio.

here is a fact sheet on Zinc.

https://ods.od.nih.gov/factsheets/Zinc-HealthProfessional/

Zinc is important for smell and tied to ADHD and IQ.

Pumpkin seeds are a great source of Zinc.

****this is not medical advice but I have found often nutrition is the root cause of many maladies and doctor's too often treat the symptom and not the cause.

good luck on your continued journey.

I hope this is helpful.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

2 Corinthians (KJV) 1:3,4  3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.”

posterboy by the grace of God,

  • 10 months later...
Oneloved Apprentice

UPDATE:

I decided to try eliminating nitrates in August 2017 after advice from a friend.  Within days my daughter was no longer complaining of constantly itching all over.  

Despite being off nitrates, her itching symptoms returned two months later.  I began to suspect that the daily ½ dose of Miralax every evening was to blame.  She has been on Miralax for nearly 2 years per the orders of her gastroenterologist, with no sign of her body improving enough to eliminate without it.  

In March, we decided to discontinue cyproheptadine, which her gastroenterologist had prescribed to increase her appetite.  Since it constipation is one of its side effects, it seemed to be aggravating the cycle of constipation, suppressed appetite, and inability to get off the Miralax.  

With the cyproheptadine gone, we decided to discontinue Miralax and switch to a daily dose of magnesium instead.  It has been a difficult transition, with my daughter often not pooping for up to 4 days, only to finally eliminate by diarrhea.  However, the itching and “skin crawling” symptoms are completely gone. 

In May I cooked a meal with nitrates to test whether they were safe to reintroduce, and she began complaining of itching within hours, so that will stay out of her diet.  

One week later, I decided to test her reaction to Miralax and gave her a ½ dose in the afternoon.  She began complaining of itching by bedtime.  We have deduced that Miralax has likely been the primary cause of her itching symptoms for over a year, and will not put her back on it.  

The challenge has been to find the correct dose of daily magnesium to keep her regular without diarrhea, but with our naturopath's help, it appears we are finally on the right track to a solution. 

We also decided to have her genetically tested for celiac, and the results came back negative.  The specialist I spoke to said that it doesn't necessarily rule out celiac, however, because geneticists are constantly making new discoveries for genetic markers that were not previously known.  She recommends retesting several years down the road. 

Thank you all for your help and advice.  

Posterboy Mentor

Oneloved,

I am glad you found out what it was.

Here is a nice cbsnews article on the problems with Miralax in children.

https://www.cbsnews.com/news/miralax-side-effects-in-kids-should-parents-be-concerned/

You should join the Parents against Miralax petition. As of a year ago according to cbsnews it had 16K+ members.

Posterboy,

Ennis-TX Grand Master
1 hour ago, Oneloved said:

UPDATE:

I decided to try eliminating nitrates in August 2017 after advice from a friend.  Within days my daughter was no longer complaining of constantly itching all over.  

Despite being off nitrates, her itching symptoms returned two months later.  I began to suspect that the daily ½ dose of Miralax every evening was to blame.  She has been on Miralax for nearly 2 years per the orders of her gastroenterologist, with no sign of her body improving enough to eliminate without it.  

In March, we decided to discontinue cyproheptadine, which her gastroenterologist had prescribed to increase her appetite.  Since it constipation is one of its side effects, it seemed to be aggravating the cycle of constipation, suppressed appetite, and inability to get off the Miralax.  

With the cyproheptadine gone, we decided to discontinue Miralax and switch to a daily dose of magnesium instead.  It has been a difficult transition, with my daughter often not pooping for up to 4 days, only to finally eliminate by diarrhea.  However, the itching and “skin crawling” symptoms are completely gone. 

In May I cooked a meal with nitrates to test whether they were safe to reintroduce, and she began complaining of itching within hours, so that will stay out of her diet.  

One week later, I decided to test her reaction to Miralax and gave her a ½ dose in the afternoon.  She began complaining of itching by bedtime.  We have deduced that Miralax has likely been the primary cause of her itching symptoms for over a year, and will not put her back on it.  

The challenge has been to find the correct dose of daily magnesium to keep her regular without diarrhea, but with our naturopath's help, it appears we are finally on the right track to a solution. 

We also decided to have her genetically tested for celiac, and the results came back negative.  The specialist I spoke to said that it doesn't necessarily rule out celiac, however, because geneticists are constantly making new discoveries for genetic markers that were not previously known.  She recommends retesting several years down the road. 

Thank you all for your help and advice.  

Life changing tip with magnesium citrate dosing....get a scale and go by grams. I spent a month measuring it....that 2tsp can be 4g or up to 12g.....it depends on how you scoop it and how settled the powder in the container is. Natural Vitality Calm is what I used for the longest time, recent bowl habits have me scaling back to more magnesium from doctors but but it does not have the laxative benefits....just with the nerves.

  • 4 years later...
Vicrob Apprentice
On 7/29/2017 at 6:06 PM, Oneloved said:

She's never had a formal celiac diagnosis, but all four of my girls have tested positive for gluten intolerance with the stool test, and have been gluten-free since they were toddlers.  She's my third child, and by far the most sensitive.   She's growth delayed and has had ongoing digestive issues.  We can't afford genetic testing and I'm not willing to put her through the misery of feeding her gluten for the blood test, or the invasive biopsy (which probably would show nothing anyway, since an endoscopy showed that we had succeeded in healing her gut).  

I have purged my kitchen countless time, combing over every label and banning all gluten.  My husband is the only one who eats wheat in our house and he has a separate cupboard and toaster out in the garage.  When she was five, we discovered that she was being glutened from the raw chicken I was buying, which had been injected with broth.  That discovery enabled her to finally gain enough control of her bowels to get out of diapers.   

Since eliminating dairy and almonds a few months ago, we've finally been able to forgo the Miralax and get her regular just with a daily dose of calcium/magnesium.  But this itching sensation is a new thing, and we just can't seem to nail down the cause.  We homeschool and we always bring our own gluten-free/df food wherever we go, so I can't figure out where she might be getting gluten, if that's the cause.  

We've had a dog for the past four years, but it's never been a problem before.  We do use Terminex, and flea treatments for the dog.  Since there are no bug bite marks or rashes, it doesn't appear to be fleas.   Her blood allergy testing came back normal, and none of the histamines our allergist recommended have worked, so he says it doesn't believe it's an allergy/histamine reaction. 

I had this insect crawling sensation for months and in the end turned out it was my liver enzymes which were raised. Years after and many bouts of raised liver enzymes and being accused by GPS of being alcoholic - and feeling awful, I’ve been diagnosed. I have gluten ataxia. My liver was getting messed up due to gluten. Your comments made me think it maybe her liver. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

@Vicrob,

Thiamine deficiency can occur outside of alcoholism.  Thiamine deficiency can occur in malabsorption syndromes like Celiac Disease.

Elevated liver enzymes are frequently seen in alcoholism because alcohol interferes with the absorption of Thiamine (Vitamin B1) resulting in Thiamine deficiency.  Alcoholism damages the small intestine where vitamins are absorbed. 

Thiamine deficiency can occur in Celiac Disease.  Celiac Disease damages the small intestine where vitamins like Thiamine are absorbed.  

My doctors did not recognize Thiamine deficiency outside of alcoholism.  These doctors accused me of lying about alcohol consumption, too.  I knew better as a microbiologist.  

Ataxia is a hallmark of Thiamine deficiency.  So is neuropathy, the creepy crawly insect crawling under the skin.  Neuropathy starts in the hands and feet and can progress higher.

I took high dose Thiamine supplementation and have recovered from ataxia and neuropathy.  I took Thiamine Hydrochloride, Benfotiamine and Allithiamine.  Benfotiamine and especially Allithiamine (Tetrahydrofurfuryl disulfide, TTFD) is especially helpful in ataxia.  

Checking for and correcting vitamin and mineral deficiencies is part of proper follow up care for Celiac patients.  

The eight B vitamins all work together.  If you're deficient in one, you are probably deficient in the others, too.  Taking a B Complex and extra Thiamine and Vitamin D really helped resolve my ataxia issues.  

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,836
    • Most Online (within 30 mins)
      7,748

    Art Glassman
    Newest Member
    Art Glassman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @ABP2025, Here's some studies and articles that will help you learn more about thiamin and all... I will write more later. It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ and... Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/      
    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
×
×
  • Create New...